By Aparna Nair
As Douglas Baynton pointed out, once you begin to ‘see’ disability, it is everywhere.1 I never had to look too far. I do not possess particularlly lucid memories of my childhood. What I do remember is my childhood was punctuated and subsequently disjointed by the ebb and flow of epilepsy (‘apasmaaram’ in my language, Malayalam); as is often typical for the ‘unhealthily disabled’.2 At the age of 11, I had my first, dramatic seizure. I don't recall much about the event, just brief flashes of pain, panic and confusion. Over the next seven years, I only had ten or so seizures and my epilepsy eventually responded to a cocktail of medications. While cushioned from the economic stresses of living with a chronic illness in India by the protections and privileges afforded to an ‘upper-caste’, middle-class family, epilepsy nonetheless proved to be quite cataclysmic.
I remember people kept telling me I should have been grateful; grateful that I was only occasionally sick, grateful that ‘it’ could be treated. But I spent most of my adolescence terrified of the silent beast that seemed to sleep in my brain. A beast that was woken from its fitful slumber when I was tired, anxious, hungry or sleep-deprived.
Epilepsy had also marked me as irrevocably different. For me, and indeed for my family, epilepsy had been neither an ‘appropriate difference’ nor, as Friedner recently argued, perceived as ‘non-threatening, ‘feel-good’ diversity in India.3 Epilepsy had marked and fixed me as the ‘sick girl’ through my adolescence, one whose corporeal non-normativity was clear, but little understood and often conflated with mental illness. As a result, I spent many decades struggling to conceal my epilepsy, driven by a powerful desire for social normativity. Yet my identity and selfhood were irrevocably shaped by epilepsy.
As Douglas Baynton pointed out, once you begin to ‘see’ disability, it is everywhere.1 I never had to look too far. I do not possess particularlly lucid memories of my childhood. What I do remember is my childhood was punctuated and subsequently disjointed by the ebb and flow of epilepsy (‘apasmaaram’ in my language, Malayalam); as is often typical for the ‘unhealthily disabled’.2 At the age of 11, I had my first, dramatic seizure. I don't recall much about the event, just brief flashes of pain, panic and confusion. Over the next seven years, I only had ten or so seizures and my epilepsy eventually responded to a cocktail of medications. While cushioned from the economic stresses of living with a chronic illness in India by the protections and privileges afforded to an ‘upper-caste’, middle-class family, epilepsy nonetheless proved to be quite cataclysmic.
I remember people kept telling me I should have been grateful; grateful that I was only occasionally sick, grateful that ‘it’ could be treated. But I spent most of my adolescence terrified of the silent beast that seemed to sleep in my brain. A beast that was woken from its fitful slumber when I was tired, anxious, hungry or sleep-deprived.
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| Source: Wellcome Trust, A kuttar or line of blind beggars in Kabul, 19th century |
